Becky, Yes, anything new like a rash is most definitely something your neuro should see. Maybe even a rheumatologist. Did the dermatologist define what kind of rash it was? Take a biopsy? If not, they should have. It could be celiac disease, a reaction to a med, dermatomyositis, lupus or a number of other things; all of which need attention right away. A rash is a signal to you that something else is going on! It is not usually a "disease" in and of itself.

It sure sounds to me like you have MG. And here comes the lecture . . . If you are EVER in a place where you can't open your eyes or breathe or move or swallow, you need to call 911. Period. Breathing in MG can decompensate very quickly and there is no way to tell if it'll get so bad that you can stop breathing. ICU is absolutely the place to be. I've had a crisis and it is incredibly scary. It sounds like you have had more than one. You are very lucky you are still here. It's not up to you to figure out why you aren't breathing! The doctors can do that in the ICU. At the very least, they can put you on Bi-Pap to rest your breathing muscles, which is a new thing they're doing now instead of intubating.

Anything like an infection or surgery or stress or heat or whatever can flare MG. It doesn't take much. And those things can also bring on a new autoimmune disease. Not nice to think about but true. I got celiac disease after surgery in 2004.

Please do not give up on doctors. I know that some of them are a pain but you NEED them when you get worse or have new symptoms. There are very good ones out there!!!

Has anyone checked your oxygen saturation or arterial blood gas when you are having bad breathing? If not, they should have. If you don't have a good pulmonologist, get one. They are often as if not more valuable than neuros. They usually work with neuros during an MG crisis in a hospital setting. My pulmy is excellent at monitoring me and helping me through any exacerbation. She's invaluable.

So please, just go and get some good help. You really sound like you need some.

Annie

BTW, The National Jewish Center in Denver is one of the best pulmonology centers in the country.